Together for Short Lives

08/09/2026

“After Ellis came home from his last heart surgery, we came to see Marie at Little Havens. She took us through a structured post-surgery programme to help build his strength back up. Without her, we wouldn’t have known what was best – we’re balancing his cardiac condition, which means he can’t exert himself too much, but also trying to build his strength and muscle tone,” says mum Heather.

For World Physiotherapy Day, we're celebrating the incredible physiotherapists working across palliative care to support children like Ellis at Havens Hospices, who is 7 years old and living with a life-limiting heart condition.

As a part-time wheelchair user, Ellis is unable to sustain the kind of movement most children take for granted. To build his core strength, he's encouraged to play games, like bowling from a kneeling position alongside regular hydrotherapy sessions.

If you've experienced physiotherapy through your local children's hospice or palliative care team, we'd love you to share it with us in the comments.

03/09/2026

We were so pleased to receive this feedback from a mum caring for a child with complex needs about her experience of attending our virtual coffee mornings. 💜

Join us this Friday at 10am for our next virtual coffee morning. To be sent the joining link, just pop your details in this form:
https://www.togetherforshortlives.org.uk/get-support/help-connecting-with-other-families-and-services/family-events/virtual-coffee-mornings

02/09/2026

“Children deserve an opportunity to learn and be taught key skills and subjects that will benefit them, no matter what difficulties they might have in their lives," says Katie Simmons, an Education Practitioner at Tŷ Hafan Children's Hospice.

Katie uses her experience as a former primary school teacher to support children living with serious illness to continue their education when they are too unwell for school.

For example, if a child is non-verbal but still cognitively able, she uses equipment and techniques to help them engage. If a child’s condition is deteriorating, or they are too vulnerable to be exposed to winter illnesses, she can bring school to them at home or in the hospice, so they don’t fall behind their peers.

As a new school year begins, please join us in celebrating the resilience and courage of all children and young people living with serious illness who are starting the new term.

And to anyone navigating the back to school period through grief, we see you too and want you to know our helpline is here to offer support:
📞 0808 8088 100
📧 [email protected]

01/09/2026

“Palliative care gave our family something fundamental – choice. It helped us understand that hospital was not the only option, and that the right support could keep our family together at home - not just at the end of Dylan’s life, but throughout his life.”

Children’s palliative care made a real difference to mum Sarah and her family after son Dylan was diagnosed with Sandhoff disease, a rare neurodegenerative condition, at 18 months old.

But too many families of children with serious illness may be missing out on this care that helps them spend precious time together at home, our new report has found.

‘Home first, except when it matters most’ reveals significant variation in how local NHS bodies in England commission children’s palliative care.

Our analysis of freedom of information responses from integrated care boards (ICBs) found that just 31% could definitively say they commission 24/7 end of life care at home for children. It is the legal duty of ICBs to provide this care.

We know that children’s palliative care can help families make the most of the time they have together. For Dylan, it meant receiving the care he needed in familiar surroundings.

When he died in January 2023, shortly before his fourth birthday, his parents’ wish for him to die at home was fulfilled. He remained at home for several days afterwards, giving family and friends precious time to say goodbye.

Sarah said: “It was a beautiful thing to have him at home. I can’t really imagine it any other way. It breaks my heart to think of other families in our situation, not being able to have that same level of care and support.”

We believe our report findings show why babies, children and young people must be explicitly included in the government’s forthcoming modern service framework for palliative and end of life care.

Read more about the findings from our new report via link in comments.

28/08/2026

"When Hugh was diagnosed, every eye was rightly on our little boy. But serious childhood illness doesn’t happen to one person. It happens to an entire family."

Ceri and Frances' son Hugh was six years old when he died from a rare cancer.

During his 10 months of treatment, the family discovered the immediate financial challenges affecting the parents and carers of children with serious illness.

Hugh's dad Ceri said: "Parents become carers overnight. Siblings watch their world change around them. And too often support only arrives once somebody is already struggling."

After Hugh died, Ceri and Frances founded the charity It's Never You and launched Hugh's Law to change that. They've been campaigning for protected leave and pay for parents of children with serious illness because they believe no family should have to choose between caring for their child and keeping their livelihood.

This month the government announced it was commissioning Hugh's Report, which will officially examine the mental health impact on parents, guardians and siblings when a child becomes seriously ill.

The government is currently consulting on plans to implement Hugh’s Law. It would provide paid leave for parents from the point of diagnosis, employment protection while caring for a seriously ill child and financial support to bridge the gap before disability-related benefits become available.

Together for Short Lives is proud to be the first UK charity to officially adopt the principles of Hugh's Law in its own staff policy.

Our CEO Nick Carroll said: "We're proud to stand alongside Ceri and Frances in their campaign for change. Their determination to turn personal loss into meaningful action is already making a difference to families across the country.”

“Adopting Hugh's Law was an easy decision for us, and I would encourage every charity in the country to do the same.”

To have your views and experiences included in the government consultation on Hugh’s Law, visit the link in our comments below.

27/08/2026

Thank you Hospice UK and Channel 4 News for highlighting these important issues. As more children with complex conditions live longer, its vital children's hospices too receive the fair and sustainable funding to continue providing the care and support families depend on.

26/08/2026

The news that energy prices will go up by 3.6% from 1st October may be especially worrying to families facing higher energy costs due to caring for a child with complex medical needs. If you’re concerned about how price rises will affect you this winter, now is the time to act.

Through our partnership with SGN we can advise you on how to cut the cost of your bills, get help if you’re struggling and ensure you have the right tariffs in place for your needs.

Find out more, including how to book a free appointment to discuss your energy needs, at: https://bit.ly/4a4yTNw

We may be able to help you lower your bills or access a free energy voucher.

25/08/2026

“My son Ted was born prematurely and at 5 weeks old we nearly lost him to chicken pox. Thankfully he survived and is now 24.
I never forgot people’s kindness and when I retired, I knew I wanted to do something to help others facing the devastating prospect of losing a child."

Sarah, a Community Support Volunteer at Claire House Children's Hospice, uses her prior experience in education as a SENDCo and as a Local Authority Inclusion Manager to help children living with serious illness break down barriers to education.

Whether starting primary school, managing the transition to secondary school, or experiencing a change of circumstances that impacts their ability to access education, Sarah steps in to help families identify their child or young person's needs and understand how best to secure the appropriate support and reasonable adjustments for them to access school.

"Using my background in SEND to help children and young people at Claire House break down barriers to their education is such a privilege. With the right support and encouragement, school can bring so much richness and joy to a child’s life.”

Thank you, Sarah, and thank you to all educators working across children's hospices, hospitals, schools and community settings who go above and beyond to ensure children living with serious illness can access education and be supported to live full lives.

21/08/2026

There are lots of ways to support Together for Short Lives - one option is playing What a Lotto💜

With daily prizes up to £2,000, a £25,000 monthly jackpot and a prize promised for every player, there are so many reasons to play. The best one of all though? You get to support our amazing charity.

If you’d like to get involved, follow the link in our comments.

T&Cs apply. 18+. Please play responsibly.

20/08/2026

Please join us in sending the biggest congratulations to all the incredible young people receiving GCSE results today! ✨